Published On: Wed, Apr 9th, 2014 on 2:44 pm

Couple to drum for 100 miles in aid of girl with rare genetic disorder

Drumming For Grace

Grace with her loving mum Fiona

A couple from Baildon have challenged themselves to walk 100 miles around West Yorkshire whilst drumming in aid of charity.

Steve Janetta and partner Marina Waymouth, will take on the task to support nine-year-old Grace Hitchens and her charities Niemann Pick UK and Martin House Hospice.

Grace, from Bingley in Bradford, suffers from Niemann Pick Type C, which is a life-limiting condition that means sufferers lose skills, including the ability to walk, talk and eat.

It took the life of her elder brother Harry in 2010 when he was only seven.

With no cure and affecting around 50 children in the UK, early onset of this condition means that children rarely survive beyond teenage years.

Grace was able to walk unaided last year, but now she needs adult support. And she can no longer say mummy or daddy, which is devastating to her parents, Fiona and Carl.

Steve, who is a drumming teacher in Baildon, and Marina, were so moved by Grace’s plight that they decided to march for her.

Steve explained: “I heard about Grace’s condition through her aunt, who I teach to play drums. It is heartbreaking to see the illness taking hold of Grace, but we are also incredibly moved by the courage she and her family show every day.

“Our aim is to raise £10,000 for Niemann Pick UK and Martin House Children’s Hospice who have provided tremendous support for the family. And we want people from all over Yorkshire to get involved.”

The couple will begin their march on 14 April in Baildon, then march through locations around West Yorkshire including Leeds, Batley, Brighouse, Halifax, Bradford, Oakworth, and Keighley.

People can donate via www.justgiving.com/gracehitchens1 or by texting DRUM52 followed by the amount to 70070.

You can also follow the march on Twitter @wishforgrace.

About the Author

Hasan Faridi

- Hasan is the founder and editor-in chief of the Yorkshire Standard. A BA Hons graduate from the University of Huddersfield, he has over four years of experience in newspapers, magazines and radio.

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